How My Insurance Company Is Deciding My Breast Cancer Treatment

Last week I had my first cycle of chemo for Stage IV breast cancer. The results of the PET Scan were not as bad as expected. I do have Stage IV breast cancer, but that’s because it has moved to the lymph nodes underneath both arms. No cancer cells were found in my organs nor bones.

That doesn’t mean it won’t spread because my insurance company is denying my oncologist the drug that stops division of the cancer cells.

Also this week, as friends and families educate themselves to help me get through this, I’ve found that I have to keep reminding them that there are different types of breast cancer cells. As my friends and family talk to cancer survivors and read things online about breast cancer, survival rates, etc. it’s important for them to remember that breast cancer has different cells. The type of cells are important for diagnosis and treatment.

The parasites that are trying to give life to themselves by eating my body from the inside out are HER2-positive cancer cells. They are aggressive. Four days after the biopsy, the tumor had grown 2 inches. By the time the PET Scan was taken and the results in, the MUGA Scan was taken, and the first chemo scheduled, that parasitical, invasive tumor was even larger.

If you’ve been reading this blog for years, then you probably know that I’m one who trusts in vitamins, herbs and other supplements. I do not reject traditional medicine. I also follow Dr. Peter J. D’Adamo’s Blood Type Diet as close as possible. It all seemed to pay off for me because in order to start chemo, I needed a MUGA Scan score of at least 50. My MUGA Scan score was 72. My blood pressure and blood work were all fine.

I had been taking supplements all along, but after my diagnosis, I looked for specific supplements. I want my body to heal in between treatment cycles. But first, I needed to know more about my enemy. I tried reading reputable websites, and found Healthline.com.

“When you have a breast biopsy, the tissue is tested for hormone receptors (HR). It’s also tested for something called human epidermal growth factor receptor 2 (HER2). Each can be involved in the development of breast cancer.”

“HER2 is a gene that creates HER2 proteins, or receptors. These receptors help control growth and repair of breast cells. An overexpression of HER2 protein causes out-of-control reproduction of breast cells.

Without naming my medical providers, staff, or other identifying features, I will name my insurance company. It is Humana. This week, my first chemo cycle was delayed for about an hour as my oncologist informed me that he had been on the phone with a doctor with Humana who first denied one of the drugs to be used in my chemo.

The drug, Taxotere and cyclophosphamide (TC) destroys quickly dividing cells. It can be given either to shrink the size of the tumor before surgery to remove it, or after surgery to kill any cancer cells that may be still present in the body. The goal of TC is to cure. But there are only two sites where I was able to find that it’s the drug’s goal. One site is guess what? That of trial attorneys. More on that later.

Every cell in your body contains a supporting structure (like a skeleton). Damage to this “skeleton” can stop cell growth or reproduction. Taxotere makes the “skeleton” in some cancer cells very stiff, so that the cells can no longer grow.”

Humana does not believe that Stage IV breast cancer can be cured. For that reason, they did not want to approve my oncologist using Taxotere. He put up a good fight with them and got approval for 3 cycles. That is half of the number of cycles he wants me to receive.

I don’t understand the rhyme and reason behind it Taxotere’s manufacturer nor Humana. None of this seemed to make sense until I read information on the Gilman & Bedigian Trial Attorneys website. Emphasis added;

“Taxotere is approved by the FDA for the treatment of breast, lung, prostate, gastric, and head and neck cancer. Taxotere in the treatment of breast cancer, however, is unique because it is used to combat early stages of the disease. With all four other cancers on this list, Taxotere is only used as a second line or palliative treatment option. This means that other drugs, radiation, and/or surgery have failed to cure the patient, or the disease has already progressed past the point of long-term recovery. For this reason, patients with these cancers who receive Taxotere do not often survive to experience the long-term effects of the drug. Only breast cancer patients, who may receive Taxotere in relatively early stages of their disease, are exposed to the possibility of having to live with permanent hair loss. Most lawsuits against the company which manufactures Taxotere, Sanofi-Aventis, Inc., are, therefore, filed by women who have had breast cancer.”

After I learned the above, I thought that Humana first denying approval for my oncologist to administer me Taxotere must be related to the law suits regarding permanent hair loss to women who the company feels will not survive to experience the long-term effects of the drug curing their type of breast cancer.

Sounds crazy. When a patient has cancer, any type of cancer, 5 years might be considered long-term. It’s certainly better than 5 months.

“Oh, I’m going to live the next 5 years with permanent hair loss so I’m going to sue the company because I don’t want to die bald.”

Ridiculous!

Then I wondered how they distinguish between “aggressive” and “early stages.” As I experienced, there is a practice of turning patients away for mammograms because of previous, non-cancerous issues. I was turned away because since I had previous, non-cancerous issues, they require a diagnostic mammogram. Diagnostic mammograms are only performed with a doctor’s order. That means that I had to call my primary care physician for an order, and the nurse who gate-keeps the phone said that my primary care physician will not write the order without seeing me. The closet appointment was a week away.

No problem! Why, you ask? Because I was told that I could go to Prompt Care for an examination and order. Fine. The situation was too serious for me to debate with Humana’s choices of having a zero copay to see my primary care physician, as opposed to a $25.00 co-pay for Prompt Care. The insurance company has made a deal with the network and so be it! My life is not worth haggling over $25. There is nothing on the hospital’s website that tells you if you’ve had previous issues, to speak first with your primary care physician to order a diagnostic mammogram.

The Prompt Care doctor wrote the order and sent it directly to the Women’s Center. I did not receive a call from the Women’s Center. Two days later, I saw my primary care physician and was told that the Women’s Center does not call patients to schedule appointments for diagnostic mammograms. Patients must call them. He made sure that the order went through.

Eight days, three inches. Five more days until biopsy. According to a published study, HER2-positive tumors grow an average of 0.859 %/day.

Four more days, and it grew. I can’t help but wonder if I had met the “early stage” requirement to be treated with Taxotere if insurance companies didn’t require patients to jump through hoops to get diagnostic exams that are classified as “wellness” until you make the call.

Oh – and that biopsy? It’s costing me a $250.00 copay because Humana says it was performed in a stand-alone facility according to the hospital’s billing code. A stand-alone facility is an office or facility separate from a physician’s office or the hospital. The biopsy was performed in the hospital, but their billing department told me there is nothing they can do to change the billing code. The hospital’s billing under the incorrect code requires me to fork over $250 rather than a $20 copay.

In the midst of dealing with the disease and treatment, I’m not sure if I’m up to writing letters to the hospital about their incorrect billing practices. The last letter I wrote to the hospital’s Risk Management Department about their Women’s Care Center has gone unanswered. In the alternative, I can send Humana all of the documentation that I received for where the tests took place, but I’m not in the mood for being given the run-a-round. Maybe next week.

The way of the system that delays making an “early stage” cancer into palliative care is no exaggeration on my part. The following is from Cancer.Net, doctor approved patient information from ASCO, which is the American Society of Clinical Oncology.

“About 5% of women have metastatic cancer when they are first diagnosed with breast cancer.”

“If the cancer has spread to the regional lymph nodes, the 5-year survival rate is 85%.”

Taxotere is a drug that Humana is saying it will only approve to stop the growth of cancer cells as long as they are in breasts. Those same cancer cells in lymph nodes — naw. Let them grow beyond the lymph nodes into organs and bones because they are more interested in saving breast parts than giving women with metastatic breast cancer a chance to live — permanently bald or not.

Based on an article by the law firm, Sanofi-Aventis Corp., the manufacturer of Taxotere, has no problem paying out settlements. I suppose that’s because if they can argue that the average life-span with metastatic breast cancer is five-years, then the amount of settlements is low, compared to settlements for women who might live longer bald.

Humana is not my oncologist, — my oncologist who looks into my eyes and the eyes of my family, who talks to us, and who respects me as a human being.

Last night I ended up going to the ER. I’ve not yet had the port installed for chemo, so last week they ran it through a regular IV. My hand became swollen and I was told to use hot compresses. Three days of hot compresses and my hand began swelling in other areas all the way down to my wrist. Turns out that I have blood clots – deep vein thrombosis. The nurse practitioner in the ER gave me a Xarelto and a prescription. Because my hand is also red, she also prescribed an anti-biotic.

This morning I had a nose bleed. I was instructed that if it bleeds for more than an hour to get to the ER. Chances are that the surgery for the port will be postponed. I trust the medical professionals treating me and I am sure this is not their first time seeing this situation. My hope is that the chemo will not have to be delayed. I am in pain. I want the cancer cells to stop eating through my tissue. I want the cancer cells to die.

By the way, I’m posting this under the category “Happiness and Kindness” because in spite of things, my attitude towards others and life itself, shall not change.

To interject a sense of humor, women in Stage IV breast cancer should always early vote. If they die before election day, it will run people crazy trying to figure out how dead people voted.

I had heard that medical treatment in the US had little to do with patient care but this…this is awful. I’ve had a brush with cancer myself, so I know that extra stress is not what you need right now. Maybe what’s needed is massive class action suits against the insurance companies. 😦

I hesitate to offer this, and please talk to your oncologist about it, but have you considered using iodine as part of your wellness routine?

Iodine is like food for your immune system. Stress depresses the immune system, so iodine may help keep your general resistance levels up. If you do want to give it a try, just ‘paint’ some of the iodine onto your skin. It will stain so try and do it on a spot that won’t show. The iodine is absorbed via the skin and any that isn’t used just gets peed out.

As a general rule, if the iodine stain takes less than 24 hours to disappear, your body is using it up – i.e. needs it.

I hope you get the treatment you need without more stress. Stay positive. -hugs-

acflory,
My oncologist already knows that he’s dealing with a patient that believes in natural treatment without forsaking traditional medicine, so I’ll talk to him about iodine. It’s rather funny — they said that I’m the healthiest cancer patient they’ve ever had. I am a “diary” person and eat yogurt and cheeses, but that might not be enough intake of iodine to help, so I am very grateful for your input and suggestions. Thank you so much, dear friend.

If you can get sufficient iodine through diet alone then that’s the best path to take. Here in Australia, our soil is lacking so iodine supplementation is recommended for pregnant and breast-feeding women by the govt health agency.
You may not need iodine supplements, at least not yet, but bear it in mind once the treatments start. Every little bit counts.
I think you’re incredibly brave to talk about your breast cancer, and I hope you keep us updated on your progress.
All the very best. -hugs-

Not only have I heard of laetrile, I had a sister-in-law who turned to it when she had lung cancer. She died a miserable death. This is not to draw conclusions that it doesn’t have benefits in fighting cancer, but it depends on the type of cancer cells. Weekly, I am asked what vitamins and supplements I’ve taken for the day and past week. But, that’s the thing. Many of the foods that are promoted to “kill cancer” are things I’ve eaten for decades. It’s not that I ate them for that reason, but rather because I like them — raw broccoli, cauliflower, carrots.

I think that when we eat right, our bodies build up its defenses, but when something whose sole purpose is to eat our cells comes along, it’s like trying to fight off canon balls with small bullets.

I am so very sorry to hear all that you are going through, my friend. I had no idea and my jaw has dropped to the floor. The issues with Humana don’t surprise me, and I think the best advice I could give you is to hire an attorney as quickly as possible. Health care in the U.S. is a joke, but this is no joking matter. Please take care, and keep us posted. We all care about you. You know I’m not into “thoughts and prayers”, but I will be keeping you in my heart.
Hugs!

Jill,
My jaw dropped too when I got the biopsy results. Insurance companies are regulated through a federal agency, so getting a lawyer may be a waste of time and energy.

This afternoon I got a call from the physician’s assistant office for my primary care physician. For at least a year, he prescribed Vitamin D in a heavy dose once a week for a month. Last week I had my blood tested for my vitamin D level so today a woman who introduced herself as being with his office called me with the results. They came out fine. However, twice this year a rash came to both of my arms. The physician’s assistant prescribed a medication for the itching. I’ve been taking Vitamin D3. You might have read how I discovered that the Brand I was taking contained oyster shells as its calcium source. I had not read the label well enough. It was GMO free, preservative free, etc., and from a company I’ve ordered other vitamins from since about 2006. I’m allergic to shellfish. I don’t know what that allergy might have done to my immune system.

When I told the message deliverer who called today to tell the physician’s assistant that I changed Brands, she retorted that Brands make no difference. She didn’t even give me the chance to complete my sentence. Then as I explained how he had prescribed a medication for itching rather than get to the source, she said he MIGHT be interested in that.

That’s the real joke. I do understand that they are busy and I don’t want to engage them in chit-chat, but think that so many on staff are abrupt that it discourages some patients. My point to her was that the physician’s assistance might be helped if he should get another patient with the same symptoms so he can at least ask the right questions. Medical science is a science of learning, and patients are important in helping their providers learn about them — but only when they have staff who likes what they do rather than being only message deliverers.

My daughter is an RN for a large urology practice, and the things she has told me about how insignificant the patients really are to the doctors and administrators has largely turned me against the medical profession in the U.S. It is, in a nutshell, all about profit, not about the patient. I order all my medications from Canada, for I cannot afford the several thousand dollars I would have to pay each month for my insulin and heart medications if I bought them in the U.S. And people complained about ACA??? Sigh.

Jill,
Those called into certain professions now, such as the medical profession, no longer operate according to their calling. They operate under the constructs of medical malpractice insurance and health insurance companies. Then there are lay people who don’t like working with people, so it’s nothing more than a job to them.

Not having any health issues previously that required high cost medication, I am now learning about it, AND SHOCKED! It appears that for medication for the most serious conditions, the price is over $500 a prescription. Health care and medication should not be based on income.

You are quite right, which is why my daughter recently earned a degree in Computer Programming, for she is disillusioned by the medical profession these days. She went into nursing some 20 years ago to help people, but today she says the doctors don’t even bother to take the time to learn their patient’s names … it’s like a cattle market … get ’em in and out and collect the money.

If I bought the two types of insulin I have to have to stay alive here in the U.S., it would cost me nearly $2,000 per month, about $600 more than my Social Security check. I order the exact same meds from Canada and pay under $500 per month. Big difference, eh? And this CVS-Aetna merger concerns me, also.

Jill,
It would be great if an activist law firm challenged life-sustaining, and life-saving prescription drugs as a constitutional right. I heard a politician campaigning today say that no one should have to decide whether to put food on their table or pay for medication. Well, the truth is that people are not deciding between food and medication but rather, life and death.

I’ve long said that every member of Congress, before taking his seat in the Capitol, should have to spend one month living in poverty, in the projects, the ghettos, homeless shelters … without access to his wealth, but a stipend equal to what the average poor person receives. They have no idea how the poor live, for they have never been there. If they are going to represent us, they ought to at least know the challenges we face.

Jill,
That’s a good idea and here’s another one. When citizens turn 65 years old and if they have worked and they and their employer paid into their social security, they are automatically placed on Medicare. Even the self-employed pay a self-employment tax that pays into their social security and Medicare. Yes, if Donald Trump paid self-employment taxes or was paid by his companies as an employee, he too was given Medicare at the age of 65. Every member of Congress 65 and older should sit down, look at what Medicare Part A provides, then decide if citizens can afford supplemental policies that provide them coverage that Medicare Part A does not. They might be surprised to learn the high co-pays for diagnostic tests — and physicians do very little without diagnostic tests.

Jill,
Those called into certain professions now, such as the medical profession, no longer operate according to their calling. They operate under the constructs of medical malpractice insurance and health insurance companies. Then there are lay people who don’t like working with people, so it’s nothing more than a job to them.

Not having any health issues previously that required high cost medication, I am now learning about it, AND SHOCKED! It appears that for medication for the most serious conditions, the price is over $500 a prescription. Health care and medication should not be based on income.

Hi Xena, I am so sorry to hear. You are an incredible woman! I am concerned and wish it goes into remission.

Is it stage 4 or stage 3 breast cancer since there was no spread to distant organs? Though with the unnecessary delay by the insurance company there could be distant micrometastasis now. That was not meant to scare but to validate a vital point you made.

Never forget medical errors is the third leading cause of death for a reason. You can see why can’t you? It’s the systemic lack of coordination, communication, and plain incompetence. At a time when you are most scared about your health, medical staff can be insensitive and at times cruel. The insurance companies calling the shots without much liability compounds the problem.

When you or your advocate speak to the insurance company ask to speak with an RN or doctor? You can, but it will not be easy. If you first ask to speak with a supervisor then badger that person with thought-provoking questions (ones that make them concerned about liability) they will pass you along to someone higher and eventually you will speak with someone on the team making the decision. And that person can be of help. With Obamacare, everything changed, and the quality of medical care decreased while out of pocket expenses continue to rise.

I too believe in homeopathic medicine but to a certain point. A word of caution:
One of my first encounters with a breast cancer patient was when I found a mass on an exam. The mammogram confirmed, and we must have done a biopsy too as she decided to seek alternative instead of traditional medical treatment. One year later after alternative homeopathic medicine, she returned with the mass almost ten times larger. You didn’t need to examine her to see the gangrenous ulcerated lesion or the underlying mass. By then it was too late, and she died.

When I practiced, Herceptin was the miracle drug for advanced stage HER2 breast cancers. At that time the cardiac side effects were not appreciated. Taxotere wasn’t yet on the market at least not for breast cancer, but I recall reading about it.

Xena, please get an advocate. It doesn’t have to be a paid advocate just someone who can take you to appointments, take notes and make calls for you. Take care of yourself; stress is the last thing you need. Here you are fighting for life. Wish I could give you mine. Good Luck, my friend! Don’t hesitate if I can be of help.

Angela,
Thank you for your well thought out comment, your concern, and your heart.

To answer your question, yes, it is Stage IV because the cancer cells are in the lymph nodes underneath both of my arms. My oncologist believes that he can kill those cells if he can stop them from dividing, which is why he wants to use Taxotere in my chemo cocktail. My oncologist did speak directly with a physician with Humana, which resulted in him approving Taxotere for 3 cycles. My oncologist wants me to have 6 cycles. The physician with Humana said that if the cancer cells in my lymph nodes are killed of, that they will not cover more than 3 cycles because Taxotere is intended as a “cure” for breast cancer that is limited to tumors in the breast.

The nurse advocate assigned to me is fantastic. She’s patient and puts up with my silly jokes. She takes notes, coordinates all services, and makes my appointments. My son qualifies for FMLA and he has been my rock getting me back and forth to appointments. Those of my friends who are retired live a good distance from me, and the rest of family all work or also live in other states. They are however, trying to coordinate so if I need them down the road, they will be here.

As this journey continues and I know more about how I feel, I might consider driving myself for lab appointments. There’s only a small section of town I would drive through that has traffic but I will carefully consider before getting behind the wheel. If my appointments are changed for Senior Citizen day, I can drive slow and not be yelled at. LOL!

About homeopathic, I believe that we need the proper balance of nutrients and such, but never to replace traditional medicine when it comes to certain illnesses. In other words, you won’t have to worry about me forsaking chemo and the instructions of my doctors in exchange for nontraditional medicine.

The way things have seemed to be even before the ACA, for example, is that a patient goes to the doctor with 3 complaints. The doctor narrows it down to one, prescribes medication, and makes an appointment for 2 weeks. There have been some unexplained issues that I’ve told my doctors about for years, like the off and on numbness in my left arm. It starts, then goes away for a month, then returns. I noticed that it stopped when taking an aspirin but my doctors? “Your ekg, etc. came back normal.” It was only because of how they ran the chemo and the reaction in my hand that they did an ultra sound and discovered clots in that same arm. Were they always there? Don’t know. If they were always there or recurring, what caused them? I don’t know.

They’ve said that I have allergies, but thought them to be environmental. I discovered they are not environmental. Since I eliminated soy, my sinuses have shown significant improvement.

Xena, I’m glad you have support and not on this journey alone. Hard to say if your were having recurrent DVTs but would have expected swelling in the affected arm. While ASA thins the blood, it’s not the treatment for DVTs which you are at risk for because of cancer.
When will you start chemoTx?

Angela,
I had my first chemo treatment last week. My oncologist did not want to wait until the port was put in, so he ran the chemo through an IV the regular way. My hand became swollen and red. The warm compresses weren’t helping. Throughout the day, the swelling practically disappears, but when I wake up in the mornings, it’s back. Today, I had blood work and saw my oncologist. It’s his impression that it was the chemo drugs that caused the blood clots. The surgeon who was to install the port and remove the tumor after it shrunk, will not do the surgery with the blood clots.

Although he doesn’t want to run the next cycle through my right arm, (because that’s the side the tumor is on), he said he would do so hoping that I don’t get blood clots in my right arm too, because that would mean I cannot have chemo for 3 to 6 months until the clots dissolve. He said he would put me on palliative care. That concerns me.

Xena, How are you hanging in there? I’m very concerned. It sounds like you are between a rock and a hard place. At the risk of asking the obvious, did you do or have you considered a second opinion? Are you being treated at a reputable cancer center by an experienced oncologist? As you know, not all doctors are created equal so make sure you are in the best breast cancer facility being treated by one of their best given its Stage IV.

Question to consider asking the oncologist:
-Would it make a difference to give the chemo through a central port rather than a peripheral vein in the arm? I know they considered it but gave the first dose through a peripheral IV when you developed DVT of that arm.
-Would a switch to a central port reduce the risk of chemo-induced DVT of the arm?
-If after one cycle of chemo you developed a DVT in the arm, would six cycles of Taxotere be too risky in you especially since it is seems to be an off-label dose?
-Are there alternative treatment regimens available such as Herceptin?
-Why Taxotere instead of Herceptin? I would ask to get the oncologist’s point of view.
-Ask your oncologists about a second opinion given the options presented?

A pause in your treatment, may be an opportunity for a second opinion? If you do get a second opinion, seek out a top-notch oncologist at a Mayo Clinic if possible.

I’ve known many cancer patients treated by good local oncologists who did not have the experience when complications developed as in your case. Most referred out to more experienced cancer centers and oncologists.

Hour by hour, day by day. I was doing really good after chemo until this week. The book that was given to me by the hospital said that the week after chemo is pretty bad. I had not read that part at first. 🙂

Re:

“At the risk of asking the obvious, did you do or have you considered a second opinion?”

I didn’t need to. I knew what I felt and I saw it. The only thing that was somewhat confusing is that the book says one thing about staging and my oncologist says another. According to the book, I am at Stage III.

Re:
“Are you being treated at a reputable cancer center by an experienced oncologist?”

Yes. There are three hospitals in my area and each has a cancer center. One hospital? I wouldn’t send my dog to. I have a friend who went to their cancer center for treatment of colon cancer, and her experience was horrible. After two chemo cycles, she decided that she didn’t want to go through another, so they performed surgery and she now lives wearing a bag.

Re:
“-Would it make a difference to give the chemo through a central port rather than a peripheral vein in the arm?”

The surgeon will not be me under general anesthesia with the clots. About the Taxotere? I do not know. My chemo cocktail includes Herceptin. The reason given to me for the Taxotere is because it stops the cancer cells from dividing and by stopping the dividing, it might prevent further metastasis.

The cancer center in which I’m a patient works directly with the Mayo Clinic, but mostly by way of diagnostics and continued education. The closest Mayo clinic to me is about a 5 hour drive.

Thanks for offering me to email you directly. I shall do so, probably tomorrow.

I copied part of your blog to Humana’s CEO with excerpts from your blog. His name is Bruce Dale Broussard. I penned a note that this post is an example of how social media sites are a major form of advertising and this story does not inspire others to consider the purchase of Humana.

You may want to contact the office of Senator Dick Durbin as these lawmakers have staffers who would love to help you. This is what they do. Just email his office your post with a way for them to contact you.

I’m grateful that you are here and fighting back by taking good care of yourself. We love you and we want you to get the best treatment possible.

Gronda,
I admire your tenacity and go-get-’em attitude. Senator Durbin’s office requires the signing of a release. I’m familiar with their process and at this point, I want to wait and see what my oncologist has to say.

Xena, I can’t tell you how sorry I am to read this. Besides dealing with your oncologist, I highly recommend getting to know all about how to use cannabis oil for cancer treatment. It can be used with or without chemotherapy options. My 88-year-old mother has lived with Stage 4 lung cancer for 8 years with a combination of a daily pill chemo and cannabis oil.

In general, your oncologist will know nothing about using cannabis because it’s just not in the medical school regime, but there are cannabis-knowledgable doctors around (who generally are not oncologists). And there’s lots of online support for the process because until recently, it was used mostly word-of-mouth and via YouTube video (and so on) before the newest studies started.

Many people experience remission using cannabis oil ONLY! – and there are new studies and studies in progress showing that cannabis oil does indeed kill cancer cells but without the side effects of various types of chemo. The high CBD can be used if you don’t want to feel high, but there are oils with various levels of CBD / THC available as well. In fact, you just need a few drops a day (and many people take it at bedtime), so it’s not as if you’re consuming tons of it. Good old-fashioned smoking weed can also provide some cancer-kicking benefits (and is very good for various types of pain) but the oil, of course, is condensed and powerful.

I guess the situation gets complicated but is still not impossible if you live in a state in which medical cannabis isn’t yet legal, but I’m sure there are many ways to get around that because I’ve read accounts online and also watched videos about cancer patients who did so before the current push to legalize medical marijuana .

Two sides,
Thanks for your comment. It sent me on a search for information. I found the following about Illinois;
“Like the bill being considered by federal lawmakers, the legislation in Illinois bars hemp-based CBD from containing more than 0.3 percent THC.”

I’m ignorant to what the percentage means. With marijuana being illegal in Illinois, I can’t go to jail at my age nor in my condition. 🙂 I will run this by my doctors but am presuming that they might not want to give me a prescription for the oil until after my chemo is completed. I’ve not smoked marijuana but have known some who do, and it seems the worst is that they will eat up everything in the kitchen.

Thanks for your best wishes and hugs. Words cannot express how grateful I am.

Xena, I can’t tell you how sorry I am to read this. I knew you were absent a few days but had no idea it was cancer. I pray you get better. I truly do. I am happy for the many advancements made in this field in the last twenty years. Everywhere I read there are horror stories in dealing with the insurance companies. I wonder, when they become doctors?

What I’m seeing is that pharmaceutical and insurance companies appear to have a pretty close association. They tell insurance companies the purpose of certain drugs. Then we have the medical specialists who are limited to what insurance companies will approve because they have to operate within the confines of their medical malpractice insurance.

So there are three different agencies deciding the health care of one person? What has malpractice insurance to do with a person’s health care and what their insurance compnay will pay for? I thought that dealt with covering the doctor’s business not his patients. I knew it covered the patients shall an error occur but beyond that…I am confused. Anyway, I have been praying for a full recovery.

Well, it’s like this. Medical malpractice insurance companies decide on patient health care by limiting what physicians can treat. Everything is now so specialized that even specialists can’t treat patients for routine things and primary care physicians can know what is wrong with a patient but can’t tell nor treat them — have to refer them to a specialist who then has to order diagnostic tests.

Medical malpractice insurance will only cover those certain decisions made by physicians according to their specialty. So, even if a PCP believes that a patient for example, has a serious allergic reaction, the PCP has to refer the patient to a specialist. Meanwhile, the patient is sick, miserable, short of breath and traumatized not knowing what is wrong.

I must say I didn’t know these things. I thought my doctors were sending me to specialists for no good reason. Well, what happens if the conditions deteriorate and requires a ER visit? Do they call one in who specialize in what they ‘believe’ is wrong with the person? No wonder going to the doctor is more exhausting than it used to be.

Chances are if you go to the ER with a non life threatening event, they might give you a pain pill and instruct you to call your primary care physician the next day. If by chance you have a serious condition and they admit you, your primary care physician will be contacted, and he/she will work with the hospital for specialists on staff. Then, depending on your insurance company, pre-authorizations will be sent to them for procedures and diagnostic tests. The staff will do what they can to push those through so you won’t have to wait the customary 72 hours for approval.

Yes, getting health care now is exhausting.

The other Sunday when the cancer center’s triage physician instructed me to go to the ER, and after the ultra sound and diagnosis, the printed follow-up instructions said for me to contact my primary care physician within 2 days. However, my oncologist has stated that he wants all medications run by him. The cancer center called me that Monday and I saw my oncologist on Wednesday.

Did you hear that Paul Allen, the co-founder of Windows, died yesterday from non-Hodgkin’s lymphoma? He got the news on Oct. 1st, said he was going to fight it, and died on the 15th.

Although I ended up with blood clots from the direct IV in the first chemo cycle, I have to say that I am happy that my oncologist decided to start chemo before surgery for the port. There’s no telling where the cancer cells would be now without that treatment. It would have been great had the surgeon been able to install the port before the first chemo, but that’s what happens when there’s only one highly rated surgeon in town that specializes in that type of surgery. I’m praying that no blood clots form in my right arm because the next treatment will also be through direct IV.

No, I hadn’t heard that about Paul Allen. I get so far behind on everything with my books. But that’s sad and Wow! That was quick. I had heard he had Hodgkin’s disease some years ago but wasn’t aware it turned into anything else. I hope none form either. I mean blood clots. I didn’t know it was a common thing for treatment of cancer. My mother and husband were sick about the same time but they didn’t have cancer is why I know so little about the treatment of it. But I am happy you are getting the help you need. I have heard so many say it is very difficult to get the right treatment.

Oh god don’t get my brain started on this %@#$& topic. Our healthcare system is run by insurance companies. I didn’t know that oncology actuarial doctors were a specialty! I’ve been through the same and guess what my Medicare part D did to me last month so I cannot get my ibrance until my new insurance kicks in because it’s $15,000 a month? They kicked me out of their insurance program due to non payment which is impossible because it comes out of my shitty measly disability monthly below the poverty line stipend that I worked my entire life to put money into – so that am now seen as a deadbeat!

Do go to the manufacturer of your chemo. They often have unknown programs to help pay for the cost. And your oncologist could also have you see the finance department to find other money to get them paid. They’re geniuses at it. If that doesn’t work go to MBCN or one of the funds that help pay immediately for chemo care for metastatic breast cancer. It’s not a fucking I,mediated death sentence – but the sentence “you don’t need that” from Humana is a deathly sentence.

With insurances now, anyone who is not your primary care physician is a “specialist”.

I’ve spoken with the hospital’s financial department. They gave me a referral, in addition to their application for charity. A good thing about Illinois is that they have programs for people age 60 and over. One is a legal aid program. Although they have limited focuses, they do help with healthcare issues. I have an appointment with them. Things are happening so quickly that I need others to handle the paperwork. For example, I was in the eye doctor’s office yesterday afternoon. The redness on my left hand began expanding by the minute, was burning and hurting like the dickens. I could not complete my eye exam because I needed to get to the cancer center before it closed. Long story short, 3 meds later and an appointment with my doctor this morning, labs, and referral to a plastic surgeon (because they want to see if they can save as much skin as possible on my left hand), I was too tired to think about researching, filling out applications, answering questions, etc. Oh — I should add that my chemo cocktail is going to be changed next week because the drug that caused the problem in the IV is a “recall” drug that will further attack my left hand if given again. Once the hand issue has been cleared, he’ll change the chemo back. By that time, maybe the blood clots will have dissolved and I can get the port.

Meanwhile, the oncologist said that the tumor has “dramatically changed” — for the good.

Xena, you’re indeed a warrior. And needless to say, I feel like a wuss compared to the traumas you’ve been facing. I can empathize with the overwhelming amounts of detail required in filling in that stupid paperwork. By now, with all the data collection on us metsers, you’d think within HIPPA guidelines there would exist an information sharing data platform to decrease the stress and strain.

Do let me know if you hit a bunch of brick walls…unfortunately we become experts in finding the money to cover the increasing expenses associated with MBC.
#fuckcancer
Such crap,
Ilene

Ilene,
Thanks for your kind words but there are moments I feel like a wimp. One of those times I feel like a wimp is taking 3 times a day meds that require me to get up in the middle of the night or very early morning to shove a bite of bread down to take a pill. I admire you. Your strength is encouraging. I won’t hesitate to let you know if I hit a bunch of brick walls. Thank you so much.

Oh my. My prayers are with you and I can hear the soldier in you still pressing forward fighting. Yes, you will beat this and give them a run for their money. Thanks for updating us on what’s going on and it’s frustrating too that the insurance companies aren’t stepping up as much as they should. Ugh. Stay strong my friend. Sending you love and hugs

I don’t know if you hear a soldier or just a fed-up woman. There are minutes when I’m tired and hours when I’m up for the fight. Today I had to bring to the medical network’s attention that they are billing under the incorrect code for diagnostic tests. Humana has 3 categories for them and each one has a different co-pay. The hospital bills for free standing facilities for the tests. In other words, they are saying that I was referred to a place outside of their hospital or medical centers. That’s a $250 copay for me. However, every diagnostic test I’ve had has been inside the hospital. The copay should be $20.00. Patients should not have to fight like this when they need all of their energy to fight for their lives.

You’re absolutely correct. You shouldn’t have to even focus on keeping them on track and focus on your health. Their lack of proper handling is costing you, literally and I’m so sorry it’s happening. Wish I could fix it and heal it all for you.

Thanks so much for your kindness. If I don’t hear back with some resolve by Friday, I’m writing the Director of Risk Management and cc’ing Humana. I don’t have all of my appointments in writing from the hospital, but enough of them to show where they told me to report — the hospital.

I seriously doubt it will be resolved by Friday. In September, I wrote to the Director of Risk Management. I did not hear from her until the day I published this post. She said that she had just found my letter on her desk. She passed the buck to a local Risk Manager who she said I should hear from shortly. I’ve not heard from her yet. Truly, I don’t think they want to intentionally avoid me but rather, they simply don’t know how to fix issues. When I spoke to the billing department, the woman told me that they could not change the coding for diagnostics because it would be fraud. HECK! It’s fraud to bill for a free standing diagnostic center when the tests are conducted in the hospital. There might be some agreement between the hospital and Humana.

So, here is an example of my “fed-up” attitude. I had a biopsy performed in the Women’s Center that is located in the hospital. You sign-in to register at the hospital’s desk. You are called into an office in the hospital where they have you sign forms agreeing to treatment, check your insurance card, etc. Then, you go through a hallway in the hospital to get to the Women’s Center. Yet, I have been billed for a $250 copay for the biopsy on the basis that it was conducted in a “free standing facility”.

It’s rather funny because when I spoke with Humana and based on what they said, I got this picture in my head of the old Speakeasy’s that had a business name and address on their front door, but upon entering, people went through stairs and tunnels to an entirely different location where liquor was illegally served. So I suppose the hospital thinks that if it constructs an addition to its building they can say although it’s the same address as the hospital, it’s a free standing facility because patients have to go through a hallway. 🙂

Oh no, that’s completely ridiculous. A hallway that changes the classification, unbelievable. That’s completely messed up. Yes, you keep writing and calling and making sure something is done. That’s a big difference in copay too. I wouldn’t be able to do it. This truly sucks

Today, I heard from a Financial Navigator. The problem with the billing is because Humana includes “outpatient” diagnostic tests and procedures under the same category as “free style” centers. So unless a patient with Humana is admitted to a hospital, has a test in their primary physician’s office, or in a prompt care facility, the co-pay is $250.00. When did we ever see a CT scan machine in a primary care physician’s office? And, when did prompt care ever perform procedures such as biopsies? In other words, Humana’s categorizing makes no sense, because the categories that require zero to $20 co-pay do not exist. Thankfully, the hospital is going to work with me.

It is indeed a loophole. If I’m admitted to the hospital and they perform diagnostic tests, I have a $250 a day copay for 7 days. If I’m not admitted and have those tests as an outpatient, I have a $250 copay. The only way to avoid it is to have a primary care physician with MRI’s, CT Scans, etc. in his/her office, or a doctor who will order those tests through Prompt Care — and we know Prompt Care is where you go to be told to call your primary care physician.

Yep, it’s like being a rat in a maze and both sides playing with the cheese, yet you’re losing your appetite and only want to be satiated so you can live minus the games. It’s too much to worry about when, as you said, you’re working on your life. It hurts my heart. And I wish it was a quick fix to revamp the system in those areas but that’s when it turns to a marathon

I’m afraid that as long as insurance companies are involved, we are going to have what you correctly describe as the “maze” and “marathon”. The fact that our Medicare system is setup so that people need advantage plans and supplemental insurance conveys that health care in America is all about helping insurance companies — about the “business” and not about health.

I’m old enough to remember when the first HMO company opened. There was one monthly flat fee and only prescriptions were out-of-pocket. It was limited because just beginning, it only had a handful of hospitals and doctors. That company Medcare HMO, did not last long. It went out of business, but it was the start of HMO’s and then PPO’s. Before then, people had hospitalization insurance only and if doctors needed diagnostic tests they admitted patients in the hospital and got a team of physicians together who were all on the same page. There was no problem with one doctor prescribing medication that other doctors did not know about. Once they got a handle on the patient’s issue, they knew whether to keep the patient in the hospital or discharge with instructions. Now, patients are seen in ERs, maybe given a prescription and have to return to their primary care provider then wait for referrals to specialists for a diagnosis. All the while, they have no idea what to do to help themselves and agonize over their health. And they wonder why Americans are so stress?

Oh my gosh this is horrible to hear about your insurances denials. I am so sorry. When you are in a fight for your life and you cannot even get to the treatment you need that is just a disgusting practice on Humana’s part. Can you get some assistance from the Narional Cancer Society, or at the Hope foundation? Sending positive strengthing vibes your way!

Lorelei,
Thanks for your comment. I’m unsure if the foundations you mention will pay for chemo drugs that are unapproved by the insurance company. My next treatment will not include the drug because it caused a really bad reaction at the injection point. Until that is healed, I won’t receive it in my chemo cocktail. My oncologist is going to treat me with targeted drugs.

Thanks for the positive strengthening vibes. They feel good. (((((Hugs)))))

I am holding you up in positivity! Strength and god speed to you! One more area if you are not on breast.org this is a wonderful site so many women to connect with there and good real info too. You can even be in a forum based on your particular diagnosis or treatment or really any topic. Hugs!

Thank you so much Lorelie. That web site was one I visited early on after my diagnosis. Right now, I’m considering joining local support groups because spending an hour or so on a regular schedule will work better for me than being online. I barely have the energy now to visit the blogs that I follow, and I haven’t written a post in a long time. 🙂

Thanks so much for your prayer. It doesn’t look like Humana is going to approve 6 cycles of that chemo drug but the good thing is that there has been a dramatic change in the size of the tumor after just one chemo cycle. Prayers work.

Amen! Because the Texotere leaked and killed skin on my hand, my oncologist couldn’t give it to me in my most recent chemo. It has a “recall” where it returns to where it’s been, which means it would have returned to my hand. It’s going to be about a month before my hand heals. This means that I’ll still get two more cycles with Texotere while the other drugs are working to kill the cancer cells. I will need to keep my immune system good, and am disappointed because with the blood clots, I am on a blood thinner. Every supplement intended to boost the immune system, such as garlic, I cannot take while on the blood thinner. I am getting some of those boosts in the food I eat, however.

I had no idea it affected so many parts of the body. I definitely didn’t know garlic contended blood thinning agents.
I asked a few medical experts I know about this medicine called Texotere and they informed me that yes it’s harsh but it’s the only thing we have right now and yes it can do this to one’s hands, feet and other parts and even cause alopecia. I will still continue to pray for you. The doctors can do his or her things and I’ll do mine’s. 🙂

“harsh” is not a strong enough word. LOL! If it’s doing to the cancer cells what it did to my hand, I can see why it is necessary.

Most supplements and foods that boost the immune system also thin the blood. Some of those foods are also said to kill cancer cells. I can see a correlation for why they are blood thinners and assist in killing mutated cells because tumors can build veins to give themselves a blood supply. If it wasn’t for the darn blood thinner (thanks to Taxotere giving me DVT blood clots), I would be much more relaxed eating and taking supplements to build my immune system. Even the green tea that I drink is said to thin the blood. I’ve reduced that to one mug a day.

Now that I’ve finished the anti-biotics, I can return to eating yogurt and will add some fresh berries.

Wow! I was unaware it was that bad. You have my utmost empathy and sympathy. Yes, I heard tumors create veins to feed themselves. I have had a few myself but the doctors removed them without requiring chemo. The last one was removed over 15 years ago. Maybe had I your healthy eating habits they wouldn’t keep coming back. LOL! I am happy to see you doing well.

It’s kinda funny how the body makes what is needed to keep things alive, while not being able to discern what it should let die, like cancer cells. At the time when the tumor reared its ugly head, I was fighting two allergies — shellfish and soy, without knowing I was consuming them and those allergies were causing the issues with the rash on my arms and my sinuses. So, in spite of eating healthy, my immune system was compromised and fighting on three different fronts. These last 3 days have visited me with pain, and because of the blood thinner, I can only take Tylenol which is like taking nothing. I’m standing on faith and appreciate you and the faithful standing with me.

I am happy to see you are still faring well and gathering your strength. I am told it makes one extremely exhausted.
Yes, I remember the doctors telling me my body was feeding the tumors and I asked. “Doesn’t it know not to do that.” I gave up years ago in trying to figure out how many allergies I have. Seems like a new one every year. I have always been this way.

Multiply “exhausted” a hundred times. This week, I’ve been up and around for about 2 hours before I lose all strength. That means I can cook, eat, clean the kitchen, and then have to vegetate a few hours. During the time of vegetarian, the side effects of the chemo rear their ugly head.

For years, the doctors thought my allergies were due to the environment. Nasal sprays and pills gave me headaches, and then I would end up with a sinus infection. They, neither I, thought it could be due to shell fish in the Vitamin D3 that I take, nor soy added to food. I was fighting two allergies when the tumor appeared, so my immune system must have been greatly comprised. Sadly, eliminating those does not kill the cancer cells. Now I’ve been instructed to avoid being around children who have recently received inoculations, and crowds to avoid catching viruses and germs. Yesterday, I went to early vote thinking that there would be fewer people. HA! The place was crowded. I waited in line anyway because not early voting meant going into a larger building with more people on election day.

Yes, I remember a close friend was told to avoid children, animals and large crowds after receiving chemo but he didn’t. He’s alright now but it was hard keeping him home. Nothing much helps my allergies. I just have to ride the course until the flare up goes away on it’s own. In different parts of the world I fare differently. Yes, the voting polls are going to be crowded this years with some nut talking about doing away with the 14th amendment.

That talk about the eliminating the 14th amendment is a scare tactic which I think is intended to discourage people south of the border from coming here to give birth. Each time Trump talks about taking the children and now with the citizenship thing, I can’t help but wonder if he truly thinks that the people coming here are watching U.S. television, listening to U.S. radio, or reading U.S. newspapers? He might as well put his intimidation tactics and dog-whistles in a bottle and send it out to sea.

Yes, I know it’s another scare tactic. But what he fails to forget from the way the U.S. Constitution is written it would include if that was carried out from the drawing of the Constitution in 1789. It would include him too. That’s why Lincoln clarified that fact when wrote the 14th Amendment. There would be no one left here but those of Native America ancestry and Native Americans.

Repealing the constitution requires the participation of the states. Trump can try changing the constitution by Executive Order, but he would first need to amend the constitution allowing him to do that. Oh — grandfathering his Executive Order to apply before its date??? HA! He and his wife might lose their citizenship if he does that. 🙂

Yes, to repeal a constitutional amend requires a vote by the states. LOL! Exactly. The Grandfather Clause would affect him. His family wasn’t here predating the 1860’s. LOL! Let him sign himself out of the country. LOL!

I had a bout with cancer and was treated succesfully with raw vegan diet. My research led me to conclude that the hormones and chemicals in meat and dairy is what fueled my cnacer growth. I chose not to go the chemo route and tried holistic healing. Happy to report that I am cancer free for over 15 years!

May I suggest talking with your team of physicians and ask if changing diet mid treatment would be advisable?

There are many articles online linking commercial farm factory meat consumption with cancer, perhaps switching to organic free range sources like chicken would be better.

Well, I just want to share my experience and going raw vegan worked for me, best decision I ever made. You may want to research this topic. Oh, most importantly cut back on white flour, breads cakes sweets etc. I hear cancer feeds off sugar in an acidic anaerobic environment.

Hi Danafein. Nice meeting you. As I wrote in my post, I follow Dr. Peter J. D’Adamo’s Blood Type Diet and have for years. Chicken has not been in my diet since around 2005 when I first became aware of the Blood Type diet. Other than a recurring sinus infection which I learned this year was caused by allergic reaction to soy, I’ve been pretty healthy. Since my diagnosis, I’ve learned that different cancers have different types of cells. Even all breast cancer is not the same and has different cells. The chemo drugs are not the same for all cancers, not even all breast cancers.

I’m happy that you found the raw vegan diet worked for you. Although I am a regular raw vegetable eater and took all of the proper supplements and vitamins, cancer knocked on my door. The type of breast cancer cells I have are aggressive. Since I was already eating and living properly, I could not see where it prevented cancer much less cure it. Although there have been other complications, the chemo has shrunk the tumor. I believe that by eating the proper foods and taking the proper supplements that it helped. It certainly helped me pass tests with flying colors to qualify for one of the chemo drugs used in the cocktail and my blood work returns fine.

So, I thank you for your recommendations and hope that you understand you’re preaching to the choir here, and not everyone is healed from cancer through diet.

Hi Re’nee. Nice meeting you. Sorry to hear about your diagnosis. On Friday, I met with my new oncologist. I asked about the Staging done by my first oncologist and he went over the two PET Scans. Yes, my first oncologist staged me wrong and my new oncologist is of the opinion that all I needed were the targeted drugs. I should have been staged at a late Stage II or early Stage III because of the size of the tumor. He is of the opinion that the PET Scan shows “shadows” under my left armpit might have occurred because of shaving my armpits. He has ordered a cancer marker and we are to discuss future treatment later this week. In a nutshell, the arguments my first oncologist had with Humana were unnecessary had he staged me properly.

So far I’ve been incredibly blessed. I work for a hospital and they pay 100% for my letrozole and all but $40 of my Ibrance. I feel for those that struggle with it. Insurance should never dictate treatment. No one should miss out on treatment that works for them because of cost. It sucks that money is more important than lives.

Jennifer,
I’m so happy to hear that you have insurance through work and are not hit with large co-pays.

I’ve had even more experience with Humana since first posting this. The oncologist ordered another PET Scan because of the urgency of getting me a port, and the surgeon didn’t want to install it on my right side if there were cancer cells underneath my right arm. He would not install it on the left side because of the DVT. Humana denied the authorization because I had a PET Scan in late September or early October. It took a few days of back and forth between the oncologist and their physician until he understood the purpose.

A few weeks ago, the same thing happened with scheduling another MUGA test. Those tests must be ran every few months because Herceptin can be hard on the heart muscles.

The way I figure it, the nursing staff with Humana who gets pre-authorizations don’t take time to understand the diagnosis, and even if they did, they don’t understand the treatment plan.